Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes…
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…
Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful…
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative…
Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the…
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35…
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…
PURPOSE: To examine bereavement mental health service use, barriers to use, and factors associated with use in parents bereaved by cancer. PATIENTS AND METHODS: A multicenter, cross-sectional study of 120 parents bereaved by cancer between 6 months…
BACKGROUND: Pain is common during cancer treatment, and patient self-reporting of pain is an essential first step for ideal cancer pain management. However, many studies on cancer pain management report that, because pain may be underestimated, it is…
OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal…
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are…
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…